First, I seem to be the newest here. I'm a 56 yr old grandmother raising two special needs grandchildren (with hubby). For a long time we've blamed the worsening of my symptoms on that. I had a horrible winter - SAD is blamed. My official diagnosis includes fibro, chronic fatigue, depression, anxiety, panic attacks, fatty liver, IBSi. I'm quite intimidated byeveryone's signatures - I can't begin to understand some of them!

Doc started me on NACi building up to 2400mgs a day. The only reaction to that was a sinus - like cold at the highest dose and I continue NAC with no problems. Then I did seven days of flagyli because of a maybe unrelated problem. Felt good but crashed at the end of the week. Next I was to start the doxy.

About 6 - 7 weeks ago, my ability to walk more then 10 feet went out the window. I can't stand for long, can do much of anything that requires leg stamina to do. So I'm here to ask for me and anyone else who might run into this problem, what can I do to remedy the problem. Is there anything or is it just a case where I'm out of luck?
Now don't get me wrong, I know there is no magic cure out there. I just wonder what people have done with this sort of problem and whether it might help me to regain some of what I've lost? Thanks!

i take from 26 days doxyi and i want this week upgrade to Azi 250 mg 3 days evry week ( wehldon protokol)

my question is i dont know waht different between Doxy and Minoi and i hear from many that mino is better from doxy

so ist mino right better from doxy anr waht schol i do and if i can normal change from doxy to mino and with dosis and waht schol i do if i want to upgrade this week roxi schol i take with doxy or better with mino

I picked up a comment in another post (by K23la) regarding Biofilm Testing and it perked my interest. I 'm not sure what advantage it would be to know specifically what pathogens are hiding in the biofilms we have as the removal process is, I believe, the same. Perhaps some of the more scientifically-minded here may have input.

The test is available at Fry Labs in Arizona and your own prescribing doctor can order it (the test kit will then be sent free). If you order it yourself, the test kit is $15.00.

just got my first labs back after starting treatment and PLASMINOGEN ACTIVATOR INHIBITOR 1 was high out of range 149 and THROMBIN-ANTITHROMBIN (TAT) COMPLEX was high >60. I dont know if this has anything to do with treatment protocolsi or not and havent spoken to doctor about results yet. I am in the middle of my second pulse and so far no negative results but a little bit tired.

This is a very short blog about a tortoise in the slow lane. For many years (how does this happen? - we shouldn't blink!) I had a solitary discussion about arthritis:

(1) I was getting very old very fast. (I was 55) and everything hurt.

(2) My hips are in agony.

(3) My fingers and shoulders hurt all the time.

(4) My neck is so stiff that I can't turn my head. It hurts even when I don't try to turn it.

Most of my joint pain went away while I was "sleeping" that first couple of years. Then my hips were incredibly painful during walking - then it went away. My finger joints were worked on one at a time and have slowly stopped hurting, though still have some residual swelling, probably permanent, which I accept.

Many times I read for the great pleasure gained and to satisfy my curiousity, but I discovered Greg Mortenson, Three cups of Tea, and now Stones into Schools. Along with wishing the Nobel Prize for Medicine for our cpni crew, I wish the Nobel Peace Prize for Greg Mortenson. And I am hardly ever much affected by movies, but last night we saw "Seven Pounds", with Will Smith, and will probably be affected for the rest of my life.

As for my own cpn protocol against PPMSi, I still chip away daily with my five abxi plus caffeine. We all tweak and listen and tweak some more, but I seem to have stumbled on a tight turn of the screw, thanks to John (farandwide) and Paul.

This is the first time I am posting here but I think I have read every single page and blog of this website. I am very very happy I found you guys and I really think you will save my life! I have been diagnosed with MSi in March 2009 but I have had it probably for several years. I am 29 years old but I think my first symptoms date back to when I was 23 if not 20... Anyway, I have decided to post here and not on TIMS (through wich I discovered cpnhelp) as I get very frustrated from seeing so many people trying anything but CAPi...

I had my annual visit with the neurologist at the medical school in Houston in January 2010. EDSSi now "about a 2" versus the "about 2.5" it was in January 2009. As he considered my progression (or lack thereof), he asked whether I was taking antibioticsi. I told him none since November 2009 which left him scratching his head since he can't account for my "atypical progression". (For the record, I previously discussed antibiotics with him and he dismissed it since he is of the belief that M.S. is caused by a virus).

We spoke to Dr S just now. He was approving of my going back on flagyli, and, because of nausea, cutting back on caffeine.

A couple of interesting and heartening bits came of the conversation. One is that I will continue with this protocol for another three months and call him again, sooner if there is news either way - worse or better - because I still react. But... my daily reaction is nowhere near five years and four months ago. For example, today is Azithromycin day - and Doxyi, Rifampin. Amoxycillin, flagyl, and caffeine.

On rereading last week's blog, I am amazed at what I wrote about flagyli and not taking it. Sometimes I guess I am not as "with-it" as I believe.

In May, Richard spoke to Dr. S., who put me on the usual: Doxyi, 200mg; Azithromycin, 250MWF; Rifampin, 600mg; flagyl, 1000: (these I had been on till I stopped everything on Jan 11, 2009); and then ADDED Amoxicillini 1000. I did this without fail for six months and then we called him again. But I was STILL reacting! Aaarrrgg!! He then left all abxi the same, with the exception of flagyl, which he replaced with caffeine pills.

Caffeine has played a big role in my life for the last eight months or so, with no end in sight. However, there are small reprieves that show themselves now and then. As a matter of fact, I am beginning a "now", now, and it is good. Caffeine is easier than flagyli, but not a carefree walk in the park. Since I began with flagyl and only used caffeine after nearly five years, I can't say for sure that caffeine would have been easier then. It has its own problems - but problems associated with this protocol, at least for me, would never compare to what life - or the lack thereof - would be like without it. Heartfelt and eternal thanks to all who have had a part in bringing it to the world.

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